Search

Purpose: Asians report worse experiences with care than Whites. This could be due to true differences in care received, expectations about care, or survey response styles. We examined responses to the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Medicare survey items by Whites and Asians, controlling for underlying level on the CAHPS constructs.Methods: We conducted multiple group analyses to evaluate measurement equivalence of CAHPS Medicare survey data between White and Asian Medicare beneficiaries for CAHPS reporting composites (communication with personal doctor, access to care, plan customer service) and global ratings of care using pooled data from 2007 to 2011. Responses were obtained from 1,326,410 non-Hispanic Whites and 40,672 non-Hispanic Asians (hereafter referred to as Whites and Asians). The median age for Whites was 70, with 24 % 80 or older, and 70 for Asians, with 23 % 80 or older. Fifty-eight percent of Whites and 56 % of Asians were female.Results: A model without group-specific estimates fit the data as well as a model that included 12 group-specific estimates (7 factor loadings, 3 measured variable errors, and 2 item intercepts): Comparative Fit Index = 0.947 and 0.948; root-mean-square error of approximation = 0.052 and 0.052, respectively). Differences in latent CAHPS score means between Whites and Hispanics estimated from the two models were similar, differing by 0.053 SD or less.Conclusions: This study provides support for measurement equivalence of the CAHPS Medicare survey composites (communication, access, customer service) and global ratings between White and Asian respondents, supporting comparisons of care experiences between the two groups. [ABSTRACT FROM AUTHOR]

Patient-reported outcomes (PROs) measure quality of life, symptoms, patient functioning, and patient perceptions of care; they are essential for gaining a full understanding of cancer care and the impact of cancer on people's lives. Repeatedly captured facility-level and/or population-level PROs (PRO surveillance) could play an important role in quality monitoring and improvement, benchmarking, advocacy, policy making, and research. This article describes the rationale for PRO surveillance and the methods of the Patient Reported Outcomes Symptoms and Side Effects Study (PROSSES), which is the first PRO study to use the American College of Surgeons Commission on Cancer's Rapid Quality Reporting System to identify patients and manage study data flow. The American Cancer Society, the National Cancer Institute, the Commission on Cancer, and RTI International collaborated on PROSSES. PROSSES was conducted at 17 cancer programs that participated in the National Cancer Institute Community Cancer Centers Program among patients diagnosed with locoregional breast or colon cancer. The methods piloted in PROSSES were successful as demonstrated by high eligibility (93%) and response (61%) rates. Differences in clinical and demographic characteristics between respondents and nonrespondents were mostly negligible, with the exception that non-white individuals were somewhat less likely to respond. These methods were consistent across cancer centers and reproducible over time. If repeated and expanded, they could provide PRO surveillance data from patients with cancer on a national scale. [ABSTRACT FROM AUTHOR]

Background The impact of cancer on health-related quality of life (HRQOL) is poorly understood because of the lack of baseline HRQOL status before cancer diagnosis. To our knowledge, this is the first population-based study to quantify the nature and extent of HRQOL changes from before to after cancer diagnosis for nine types of cancer patients and to compare their health with individuals without cancer. Methods The Surveillance, Epidemiology, and End Results cancer registry data were linked with the Medicare Health Outcomes Survey (MHOS) data; data were collected from Medicare beneficiaries who were aged 65 years and older from 1998 through 2003. Cancer patients (n = 1432; with prostate, breast, colorectal, lung, bladder, endometrial, or kidney cancers; melanoma; or non-Hodgkin lymphoma [NHL]) were selected whose first cancer diagnosis occurred between their baseline and follow-up MHOS assessments. Control subjects without cancer (n = 7160) were matched to cancer patients by use of propensity scores that were estimated from demographics and comorbid medical conditions. Analysis of covariance models were used to estimate changes in HRQOL as assessed with the Medical Outcomes Study Short Form-36 survey (mean score = 50, SD = 10). All statistical tests were two-sided. Results Patients with all cancer types (except melanoma and endometrial cancer) reported statistically significant declines in physical health (mean scores: prostate cancer = -3.4, 95% confidence interval [Cl] = -2.5 to -4.2; breast cancer = -3.5, 95% Cl = -2.5 to -4.5; bladder cancer = -4.3, 95% Cl = -2.5 to -6.1; colorectal cancer = -4.4, 95% Cl = -3.3 to -5.5; kidney cancer = -5.7, 95% Cl = -3.2 to -8.2; NHL = -6.7, 95% Cl = -4.4 to -9.1; and lung cancer = -7.5, 95% Cl = -5.9 to -9.2) compared with the control subjects (mean score = -1.8, 95% Cl = -1.6 to -2.0) (all P< .05). However, only lung (mean score = -5.4, 95% Cl = -3.5 to -7.2), colorectal (mean score = -3.5, 95% Cl = -2.2 to -4.7), and prostate (mean score = -2.8, 95% Cl = -1.8 to -3.7) cancer patients showed statistically significant decreases in mental health relative to the mean change of the control subjects (mean score = -1.2, 95% Cl = -0.9 to -1.4) (all P< .05). Conclusion These findings provide validation of the specific deleterious effects of cancer on HRQOL and an evidence base for future research and clinical interventions aimed at understanding and remediating these effects. [ABSTRACT FROM AUTHOR]

The article focuses on a survey of the information-seeking behavior among cancer survivors in the U.S. and the characteristics of seekers versus non-seekers. It found that about half of all Americans have sought cancer information from one source or another. Percentages of those who seek information is higher among cancer sufferers and survivors and those with family histories than it is among those with no cancer history. Quality concerns top the list of those who seek information.

Objective: Assess impact of a computer-based patient support system on quality of life in younger women with breast cancer, with particular emphasis on assisting the underserved.Design: Randomized controlled trial conducted between 1995 and 1998.Setting: Five sites: two teaching hospitals (Madison, Wis, and Chicago, Ill), two nonteaching hospitals (Chicago), and a cancer resource center (Indianapolis, Ill). The latter three sites treat many underserved patients.Participants: Newly diagnosed breast cancer patients (N = 246) under age 60.Interventions: Experimental group received Comprehensive Health Enhancement Support System (CHESS), a home-based computer system providing information, decision-making, and emotional support.Measurements and Main Results: Pretest and two post-test surveys (at two- and five-month follow-up) measured aspects of participation in care, social/information support, and quality of life. At two-month follow-up, the CHESS group was significantly more competent at seeking information, more comfortable participating in care, and had greater confidence in doctor(s). At five-month follow-up, the CHESS group had significantly better social support and also greater information competence. In addition, experimental assignment interacted with several indicators of medical underservice (race, education, and lack of insurance), such that CHESS benefits were greater for the disadvantaged than the advantaged group.Conclusions: Computer-based patient support systems such as CHESS may benefit patients by providing information and social support, and increasing their participation in health care. These benefits may be largest for currently underserved populations. [ABSTRACT FROM AUTHOR]

A letter to the editor is presented in response to the article "A New Age for Cancer Information Seeking: Are We Better Off Now?" by Paul R. Helft.

Background: Despite substantial evidence that the public wants access to Internet-based communication with health care providers, online patient-provider communication remains relatively uncommon, and few studies have examined sociodemographic and health-related factors associated with the use of online communication with health care providers at a population level. Objective: The aim of the study was to use nationally representative data to report on the prevalence of and changes in use of online patient-provider communication in 2003 and 2005 and to describe sociodemographic and health-related factors associated with its use. Methods: Data for this study are from two iterations of the Health Information National Trends Survey (HINTS 2003, HINTS 2005). In both years, respondents were asked whether they had ever used email or the Internet to communicate with a doctor or a doctor's office. Adult Internet users in 2003 (n = 3982) and 2005 (n = 3244) were included in the present study. Multivariate logistic regression analysis was conducted to identify predictors for electronic communication with health care providers. Results: In 2003, 7% of Internet users had communicated online with an health care provider; this prevalence significantly increased to 10% in 2005. In multivariate analyses, Internet users with more years of education, who lived in a metro area, who reported poorer health status or who had a personal history of cancer were more likely to have used online patient-provider communication. Conclusions: Despite wide diffusion of the Internet, online patient-provider communication remains uncommon but is slowly increasing. Policy-level changes are needed to maximize the availability and effectiveness of online patient-provider communication for health care consumers and health care providers. Internet access remains a significant barrier to online patient-provider communication. [ABSTRACT FROM AUTHOR]

Little is known about factors associated with unmet needs for symptom management in patients with cancer. Methods Patients with a new diagnosis of lung and colorectal cancer from the diverse nationally representative Cancer Care Outcomes Research and Surveillance cohort completed a survey approximately 5 months after diagnosis (N = 5,422). We estimated the prevalence of unmet need for symptom management, defined as patients who report that they wanted help for at least one common symptom (pain, fatigue, depression, nausea/vomiting, cough, dyspnea, diarrhea) during the 4 weeks before the survey but did not receive it. We identified patient factors associated with unmet need by using logistic regression with random effects to account for clustering within study sites. Results Overall, 15% (791 of 5,422) of patients had at least one unmet need for symptom management. Adjusting for sociodemographic and clinical factors, African American race, being uninsured or poor, having early-stage lung cancer, and the presence of moderate to severe symptoms were associated with unmet need (all P < .05). Furthermore, patients who rated their physician's communication score, 80 (on a 0 to 100 scale) had adjusted rates of an unmet need for symptom management that were more than twice as high as patients who rated their physicians with a perfect communication score (23.1% v 10.0%; P < .001). Conclusion A significant minority of patients with newly diagnosed lung and colorectal cancer report unmet needs for symptom management. Interventions to improve symptom management should consider the importance of physician communication to the patient's experience of disease. [ABSTRACT FROM AUTHOR]

Purpose: Patient-centered communication is critical to quality cancer care. Effective communication can help patients and family members cope with cancer, make informed decisions, and effectively manage their care; suboptimal communication can contribute to care breakdowns and undermine clinician-patient relationships. The study purpose was to explore stakeholders' views on the feasibility and acceptability of collecting self-reported patient and family perceptions of communication experiences while receiving cancer care. The results were intended to inform the design, development, and implementation of a structured and generalizable patient-level reporting system. Methods: This was a formative, qualitative study that used semistructured interviews with cancer patients, family members, clinicians, and leaders of health care organizations. The constant comparative method was used to identify major themes in the interview transcripts. Results: A total of 106 stakeholders were interviewed. Thematic saturation was achieved. All stakeholders recognized the importance of communication and endorsed efforts to improve communication during cancer care. Patients, clinicians, and leaders expressed concerns about the potential consequences of reports of suboptimal communication experiences, such as damage to the clinician-patient relationship, and the need for effective improvement strategies. Patients and family members would report good communication experiences in order to encourage such practices. Practical and logistic issues were identified. Conclusion: Patient reports of their communication experiences during cancer care could increase understanding of the communication process, stimulate improvements, inform interventions, and provide a basis for evaluating changes in communication practices. This qualitative study provides a foundation for the design and pilot testing of such a patient reporting system. [ABSTRACT FROM AUTHOR]

Competing Interests: The authors declare no conflicts of interest.

Purpose: The Consumer Assessment of Healthcare Providers and Systems (CAHPS) Cancer Care Survey is a systematic assessment of health care experiences of patients with cancer. It supports comparisons among all cancer treatment settings and modalities., Methods: Formative research included 16 focus groups with patients receiving treatment and family members; advice from a panel of oncology and quality improvement experts; and interviews with stakeholders representing oncology associations, accredited cancer centers, and community oncology practices. We conducted cognitive tests of the instrument and field tests at six cancer centers and four community oncology practices, after which the survey was finalized and obtained the CAHPS trademark., Results: The survey includes 56 questions that form six core composite measures (Getting Timely Care; Supporting Patient Self-Management; Available to Provide Care and Information; Provider Communication; Care Coordination; and Courteous Office Staff); two single-item measures of family participation in care and interpreter services; and two global ratings of cancer care and the treatment team. Sixteen additional items form three supplemental composite measures: Shared Decision-Making, Keeping Patients Informed, and Access to Care., Conclusion: Mail-only, mail-telephone mixed-mode, and Web-mail mixed-mode data collection methods are recommended. The questionnaires and instructions for use are free and available in English and Spanish on the CAHPS Website (www.ahrq.gov/cahps).

Palliative care is a growing specialty that addresses the needs of individuals diagnosed with advanced illness and their caregivers. Although palliative care has been shown to improve a variety of patient- and caregiver-centered outcomes, access to comprehensive palliative care services for patients is often limited. There is a need to identify the most effective approaches to delivering palliative care to patients in community settings. In fiscal year 2017, based on extensive input from a diverse set of stakeholders, the Patient-Centered Outcomes Research Institute (PCORI) funded nine multisite comparative clinical effectiveness research (CER) trials focused on community-based delivery of palliative care for a total investment of $80 million. These studies, focusing on advance care planning and models of palliative care delivery, represent some of the largest most complex palliative care trials funded to date. Each study evaluates both patient and caregiver outcomes, and together, these trials include a broad range of health conditions, interventions, and settings of care. PCORI has also fostered a learning network of the funded awardees to facilitate the successful conduct of these CER studies and to support awardee efforts to develop collaborative products relevant to advancing the field of palliative care research and practice. The protocols of each of the nine trials, detailed in this issue, demonstrate the expansive reach of the investment PCORI has made in an effort to further the research agenda and provide substantive research evidence in stakeholder-identified areas of need in the field of palliative care.

Objective: Little is known about factors affecting medical care experiences of cancer survivors. This study examined experience of care among cancer survivors and assessed associations of survivors' characteristics with their experience., Materials and Methods: We used a newly-developed, unique data resource, SEER-CAHPS (NCI's Surveillance Epidemiology and End Results [SEER] data linked to Medicare Consumer Assessment of Healthcare Providers and Systems [CAHPS] survey responses), to examine experiences of care among breast, colorectal, lung, and prostate cancer survivors age >66years who completed CAHPS >1year after cancer diagnosis and survived ≥1year after survey completion. Experience of care was assessed by survivor-provided scores for overall care, health plan, physicians, customer service, doctor communication, and aspects of care. Multivariable logistic regression models assessed associations of survivors' sociodemographic and clinical characteristics with care experience., Results: Among 19,455 cancer survivors with SEER-CAHPS data, higher self-reported general-health status was significantly associated with better care experiences for breast, colorectal, and prostate cancer survivors. In contrast, better mental-health status was associated with better care experience for lung cancer survivors. College-educated and Asian survivors were less likely to indicate high scores for care experiences. Few differences in survivors' experiences were observed by sex or years since diagnosis., Conclusions: The SEER-CAHPS data resources allows assessment of factors influencing experience of cancer among U.S. cancer survivors. Higher self-reported health status was associated with better experiences of care; other survivors' characteristics also predicted care experience. Interventions to improve cancer survivors' health status, such as increased access to supportive care services, may improve experience of care., (Copyright © 2017 Elsevier Ltd. All rights reserved.)

Purpose: Asians report worse experiences with care than Whites. This could be due to true differences in care received, expectations about care, or survey response styles. We examined responses to the Consumer Assessment of Healthcare Providers and Systems (CAHPS ® ) Medicare survey items by Whites and Asians, controlling for underlying level on the CAHPS constructs., Methods: We conducted multiple group analyses to evaluate measurement equivalence of CAHPS Medicare survey data between White and Asian Medicare beneficiaries for CAHPS reporting composites (communication with personal doctor, access to care, plan customer service) and global ratings of care using pooled data from 2007 to 2011. Responses were obtained from 1,326,410 non-Hispanic Whites and 40,672 non-Hispanic Asians (hereafter referred to as Whites and Asians). The median age for Whites was 70, with 24 % 80 or older, and 70 for Asians, with 23 % 80 or older. Fifty-eight percent of Whites and 56 % of Asians were female., Results: A model without group-specific estimates fit the data as well as a model that included 12 group-specific estimates (7 factor loadings, 3 measured variable errors, and 2 item intercepts): Comparative Fit Index = 0.947 and 0.948; root-mean-square error of approximation = 0.052 and 0.052, respectively). Differences in latent CAHPS score means between Whites and Hispanics estimated from the two models were similar, differing by 0.053 SD or less., Conclusions: This study provides support for measurement equivalence of the CAHPS Medicare survey composites (communication, access, customer service) and global ratings between White and Asian respondents, supporting comparisons of care experiences between the two groups., Competing Interests: Each author declares no conflicts of interest.

Background: Since 1990, the National Cancer Institute (NCI) and Centers for Medicare and Medicaid Services (CMS) have collaborated to create linked data resources to improve our understanding of patterns of care, health care costs, and trends in utilization. However, existing data linkages have not included measures of patient experiences with care., Objective: To describe a new resource for quality of care research based on a linkage between the Medicare Consumer Assessment of Healthcare Providers and Systems (CAHPS®) patient surveys and the NCI's Surveillance, Epidemiology and End Results (SEER) data., Design: This is an observational study of CAHPS respondents and includes both fee-for-service and Medicare Advantage beneficiaries with and without cancer. The data linkage includes: CAHPS survey data collected between 1998 and 2010 to assess patient reports on multiple aspects of their care, such as access to needed and timely care, doctor communication, as well as patients' global ratings of their personal doctor, specialists, overall health care, and their health plan; SEER registry data (1973-2007) on cancer site, stage, treatment, death information, and patient demographics; and longitudinal Medicare claims data (2002-2011) for fee-for-service beneficiaries on utilization and costs of care., Participants: In total, 150,750 respondents were in the cancer cohort and 571,318 were in the non-cancer cohort., Main Measures: The data linkage includes SEER data on cancer site, stage, treatment, death information, and patient demographics, in addition to longitudinal data from Medicare claims and information on patient experiences from CAHPS surveys., Key Results: Sizable proportions of cases from common cancers (e.g., breast, colorectal, prostate) and short-term survival cancers (e.g., pancreas) by time since diagnosis enable comparisons across the cancer care trajectory by MA vs. FFS coverage., Conclusions: SEER-CAHPS is a valuable resource for information about Medicare beneficiaries' experiences of care across different diagnoses and treatment modalities, and enables comparisons by type of insurance.

Importance: Shared decision making is associated with improved patient-reported outcomes of cancer treatment, but not all patients prefer to participate in medical decisions. Results from studies of the effect of matching between actual and preferred medical decision roles on patients' perceptions of care quality have been conflicting., Objectives: To determine whether shared decision making was associated with patient ratings of care quality and physician communication and whether patients' preferred decision roles modified those associations., Design, Setting, and Participants: We performed a population- and health system-based survey of participants in the Cancer Care Outcomes Research and Surveillance Consortium (CanCORS) study diagnosed with lung and/or colorectal cancer between 2003 and 2005 (56% with colorectal cancer, 40% with non-small-cell lung cancer, and 5% with small-cell lung cancer). The CanCORS study included 9737 patients (cooperation rate among patients contacted, 59.9%) treated in integrated care delivery systems, academic institutions, private offices, and Veterans Affairs hospitals. The medical records were abstracted between October 11, 2005, and April 30, 2009; all analyses were conducted between 2013 and 2014., Interventions: We surveyed patients specifically about their preferred roles in cancer treatment decisions and their actual roles in decisions about surgery, chemotherapy, and radiation therapy. We analyzed the responses of 5315 patients who completed baseline surveys and reported decision roles for a total of 10 817 treatment decisions and assessed associations of patients' decision roles with patient-reported quality of care and physician communication., Main Outcomes and Measures: The outcomes (identified before data collection) included patient-reported excellent quality of care and top ratings (highest score) on a physician communication scale., Results: After adjustment, patients describing physician-controlled (vs shared) decisions were less likely to report excellent quality of care (odds ratio [OR], 0.64; 95% CI, 0.54-0.75; P < .001). Patients' preferred decision roles did not modify this effect (P = .29 for the interaction). Patients describing either actual or preferred physician-controlled (vs shared) roles were less likely to provide a top rating of physician communication (OR, 0.55; 95% CI, 0.45-0.66; P < .001, and OR, 0.67; 95% CI, 0.51-0.87; P = .002, respectively). The preferred role did not modify the effect of the actual role (P = .76 for interaction)., Conclusions and Relevance: Physician-controlled decisions regarding lung or colorectal cancer treatment were associated with lower ratings of care quality and physician communication. These effects were independent of patients' preferred decision roles, underscoring the importance of seeking to involve all patients in decision making about their treatment.

Context: Relatively few data are available about symptoms among cancer patients., Objectives: To describe the prevalence and severity of symptoms among a large, representative cohort of newly diagnosed cancer patients., Methods: We collected survey data about symptoms (pain, fatigue, depression, nausea/vomiting, cough, dyspnea, and diarrhea) from 5422 patients with incident lung and colorectal cancer from the diverse, nationally representative Cancer Care Outcomes Research and Surveillance Consortium cohort. We described the prevalence of any symptoms and moderate/severe symptoms approximately four to six months after diagnosis. We used logistic regression to identify patient and clinical characteristics associated with symptoms, and calculated adjusted proportions of patients with symptoms., Results: In total, 5067 (93.5%) patients reported at least one symptom in the four weeks before their survey, with 51% reporting at least one moderate/severe symptom. Lung cancer patients reported more symptoms than colorectal cancer patients. Patients who received treatment or had more comorbidities were more likely to report symptoms. For example, after adjustment, patients who received chemotherapy during the six weeks before the survey were more likely than others to report at least one symptom (97.3% vs. 90.8%, P<0.001), and at least one moderate/severe symptom (56.8% vs. 46.2%, P<0.001). After adjustment, early- vs. late-stage patients did not differ in reports of at least one symptom (93.6% vs. 93.4%, P=0.853) and differed only slightly in reports of at least one moderate/severe symptom (53.3% vs. 49.6%, P=0.009)., Conclusion: Most recently diagnosed lung and colorectal cancer patients have cancer-related symptoms regardless of stage, and more than half have at least one moderate/severe symptom., (Published by Elsevier Inc.)

Having a usual source of health care has been consistently associated with greater use of preventive services, decreased use of emergency services, and with patients' ratings of quality and satisfaction with care. Ongoing patient-provider relationships may be, in part, fostered by patient-centered communication. Growing evidence demonstrates that positive patient-centered communication improves adherence to treatment recommendations, management of chronic disease, quality of life, and disease-related outcomes. We aimed to determine how patient-centered communication between patients and physicians might mediate the relation between having a source of usual care and ratings of health care quality. We analyzed data from Cycle 1 of the fourth iteration of the Health Information National Trends Survey. Data were collected through mailed questionnaire in October 2011 through February 2012 (N = 3,959). Overall, individuals with a usual source of care reported more patient-centered communication experiences and had higher ratings of quality of care. Parameter estimates for each pathway in the mediation model were estimated through regression analysis. Results confirm the importance of patient-centered communication in shaping patients' perceptions of the quality of their care, accounting for a significant portion of the observed relation between having a usual source of care and ratings of quality.

Background: Clinical trials are essential to establish the effectiveness of new cancer therapies, but less than 5% of adults with cancer enroll in trials. In addition to ineligibility or lack of available trials, barriers to enrollment may include limited patient awareness about the option of participation., Methods: We surveyed a multiregional cohort of patients with lung or colorectal cancer (or their surrogates) three to six months after diagnosis. We assessed whether respondents reported learning that clinical trial participation might be an option, and, if so, with whom they discussed trials. We used logistic regression to assess the association of patient characteristics with discussing trial participation and enrolling in trials. All statistical tests were two-sided., Results: Of 7887 respondents, 1114 (14.1%) reported discussing the possibility of clinical trial participation; most learned about trials from their physicians, and 287 patients (3.6% of all patients, 25.8% of trial discussants) enrolled. Among 2173 patients who received chemotherapy for advanced (stage III/IV lung or stage IV colorectal) cancer, 25.7% discussed trials, and 7.6% (29.5% of trial discussants) enrolled. Discussions were less frequent among older patients, African American or Asian vs white patients, and those with lower incomes and more comorbidity. Enrollment was higher among patients reporting shared vs physician-driven decisions (all P < .05)., Conclusions: In this population-based cohort, only 14% of patients discussed participation in clinical trials. Discussions were more frequent among advanced cancer patients but were still reported by a minority of patients. Strategies to expand access to trials and facilitate patient-provider communication about participation may accelerate development of better cancer therapeutics., (© The Author 2014. Published by Oxford University Press. All rights reserved. For Permissions, please e-mail: journals.permissions@oup.com.)

Purpose: High-quality supportive care is an essential component of comprehensive cancer care. We implemented a patient-centered quality of cancer care survey to examine and identify predictors of quality of supportive care for bowel problems, pain, fatigue, depression, and other symptoms among 1,109 patients with colorectal cancer., Patients and Methods: Patients with new diagnosis of colorectal cancer at any Veterans Health Administration medical center nationwide in 2008 were ascertained through the Veterans Affairs Central Cancer Registry and sent questionnaires assessing a variety of aspects of patient-centered cancer care. We received questionnaires from 63% of eligible patients (N = 1,109). Descriptive analyses characterizing patient experiences with supportive care and binary logistic regression models were used to examine predictors of receipt of help wanted for each of the five symptom categories., Results: There were significant gaps in patient-centered quality of supportive care, beginning with symptom assessment. In multivariable modeling, the impact of clinical factors and patient race on odds of receiving wanted help varied by symptom. Coordination of care quality predicted receipt of wanted help for all symptoms, independent of patient demographic or clinical characteristics., Conclusion: This study revealed substantial gaps in patient-centered quality of care, difficult to characterize through quality measurement relying on medical record review alone. It established the feasibility of collecting patient-reported quality measures. Improving quality measurement of supportive care and implementing patient-reported outcomes in quality-measurement systems are high priorities for improving the processes and outcomes of care for patients with cancer.

Objectives: To explore patients' and family members' views on communication during cancer care and to identify those aspects of clinician-patient communication which were most important to patients and family members., Methods: We conducted a secondary data analysis of qualitative data from 137 patients with cancer and family members of patients with cancer. We used a modified version of the constant comparative method and coding paradigm of grounded theory., Results: Patients want sensitive, caring clinicians who provide information that they need, when they need it, in a way that they can understand; who listen and respond to questions and concerns, and who attempt to understand the patient's experience. Effective information exchange and a positive interpersonal relationship with the clinician were of fundamental importance to patients and family members. These were interrelated; for instance, failure to provide information a patient needed could damage the relationship, whereas excellent listening could foster the relationship. Information exchange and relationship were also integral to decision-making, managing uncertainty, responding to emotions, and self-management. Clinicians who were responsive to patients' needs beyond the immediate medical encounter were valued., Conclusions: The complexity of cancer care today suggests that efforts to improve communication must be multilevel, acknowledging and addressing patient, clinician, organizational and policy barriers, and facilitators. Measurement tools are needed to assess cancer patients' and family members' experiences with communication over the course of cancer care to provide meaningful, actionable feedback to those seeking to optimize their effectiveness in communicating with patients with cancer., (Copyright © 2013 John Wiley & Sons, Ltd.)

Patient-centered communication (PCC) is a critical element of patient-centered care, which the Institute of Medicine (Committee on Quality of Health Care in America, 2001) promulgates as essential to improving healthcare delivery. Consequently, the US National Cancer Institute's Strategic Plan for Leading the Nation (2006) calls for assessing the delivery of PCC in cancer care. However, no comprehensive measure of PCC exists, and stakeholders continue to embrace different conceptualizations and assumptions about how to measure it. Our approach was grounded in the PCC conceptual framework presented in a recent US National Cancer Institute monograph (Epstein & Street, 2007). In this study, we developed a comprehensive inventory of domains and subdomains for PCC by reviewing relevant literature and theories, interviewing a limited number of cancer patients, and consulting experts. The resulting measurement domains are organized under the six core functions specified in the PCC conceptual framework: exchanging information, fostering healing relationships, recognizing and responding to emotions, managing uncertainty, making decisions, and enabling patient self-management. These domains represent a promising platform for operationalizing the complicated PCC construct. Although this study focused specifically on cancer care, the PCC measurements are relevant to other clinical contexts and illnesses, given that patient-centered care is a goal across all healthcare. Finally, we discuss considerations for developing PCC measures for research, quality assessment, and surveillance purposes. United States Department of Health and Human Services, National Institutes of Health, National Cancer Institute (2006). The NCI Strategic Plan for Leading the Nation: To Eliminate the Suffering and Death Due to Cancer. NIH Publication No. 06-5773., (Copyright © 2011 Elsevier Ltd. All rights reserved.)

Purpose: Patients with more active roles in decisions are more satisfied and may have better health outcomes. Younger and better educated patients have more active roles in decisions, but whether patients' roles in decisions differ by characteristics of the decision itself is unknown., Patients and Methods: We surveyed a large, population-based cohort of patients with recently diagnosed lung or colorectal cancer about their roles in decisions regarding surgery, radiation therapy, and/or chemotherapy. We used multinomial logistic regression to assess whether characteristics of the decision, including evidence about the treatment's benefit, whether the decision was likely preference-sensitive (palliative therapy for metastatic cancer), and treatment modality, influenced patients' roles in that decision., Results: Of 10,939 decisions made by 5,383 patients, 38.9% were patient controlled, 43.6% were shared, and 17.5% were physician controlled. When there was good evidence to support a treatment, shared control was greatest; when evidence was uncertain, patient control was greatest; and when there was no evidence for or evidence against a treatment, physician control was greatest (overall P < .001). Decisions about treatments for metastatic cancers tended to be more physician controlled than other decisions (P < .001)., Conclusion: Patients making decisions about treatments for which no evidence supports benefit and decisions about noncurative treatments reported more physician control, which suggests that patients may not want the responsibility of deciding on treatments that will not cure them. Better strategies for shared decision making may be needed when there is no evidence to support benefit of a treatment or when patients have terminal illnesses that cannot be cured.

Purpose: To assess patients' experiences with cancer care, ratings of their quality of care, and correlates of these assessments., Patients and Methods: For 4,093 patients with lung cancer and 3,685 patients with colorectal cancer in multiple US regions and health care delivery systems, we conducted telephone surveys of patients or their surrogates in English, Spanish, or Chinese at 4 to 7 months after diagnosis. The surveys assessed ratings of the overall quality of cancer care and experiences with three domains of interpersonal care (physician communication, nursing care, and coordination and responsiveness of care)., Results: English-speaking Asian/Pacific Islander patients and Chinese-speaking patients and those in worse health reported significantly worse adjusted experiences with all three domains of interpersonal care, whereas white, black, and Hispanic patients reported generally similar experiences with interpersonal care. The overall quality of cancer care was rated as excellent by 44.4% of patients with lung cancer and 53.0% of patients with colorectal cancer, and these ratings were most strongly correlated with positive experiences with coordination and responsiveness of care (Spearman rank coefficients of 0.49 and 0.42 for lung and colorectal cancer, respectively). After multivariate adjustment, excellent ratings were less common for each cancer among black patients, English-speaking Asian/Pacific Islander patients, Chinese-speaking patients, and patients reporting worse health status (all P ≤ .05)., Conclusion: Patients' reports and ratings of care differed significantly by race, language, and health status. Efforts to improve patients' experiences with cancer care should focus on problems affecting Asian and Pacific Islander patients and those in worse health.

Health communication is critical to promoting healthy lifestyles and preventing unhealthy behaviors. However, populations may differ in terms of their trust in and use of health information sources, including mass media, the Internet, and interpersonal channels. We used the 2005 Health Information National Trends Survey (HINTS) to test the hypothesis that Hispanics who are less comfortable speaking English would differ from Hispanics who are comfortable speaking English with respect to trust in health information sources and media use. Hispanics/Latinos comprised 9% of the 2005 HINTS sample (n = 496). Respondents not born in the United States regardless of race/ethnicity and all Hispanics were asked, "How comfortable do you feel speaking English?" Responses of "completely," "very," or "native speaker" were combined into "comfortable speaking English": all other responses were categorized as "less comfortable speaking English." Those comfortable speaking English reported higher trust for health information from newspapers (p < .05), magazines (p < .05), and the Internet (p < .01) compared with those less comfortable speaking English. They also reported more media exposure: daily hours listening to the radio and watching television (both p < .05) and days per week reading newspapers (p < .05). Hispanics comfortable speaking English reported much higher levels of Internet use (54% versus 14%, p < .0001). Hispanics who are not comfortable speaking English may be difficult to reach, not only because of language barriers and lower trust in media, but also because they report relatively little use of various media channels. These findings have important implications for health communications toward non-native speakers of English in general and Hispanics in particular.

Background: The impact of cancer on health-related quality of life (HRQOL) is poorly understood because of the lack of baseline HRQOL status before cancer diagnosis. To our knowledge, this is the first population-based study to quantify the nature and extent of HRQOL changes from before to after cancer diagnosis for nine types of cancer patients and to compare their health with individuals without cancer., Methods: The Surveillance, Epidemiology, and End Results cancer registry data were linked with the Medicare Health Outcomes Survey (MHOS) data; data were collected from Medicare beneficiaries who were aged 65 years and older from 1998 through 2003. Cancer patients (n = 1432; with prostate, breast, colorectal, lung, bladder, endometrial, or kidney cancers; melanoma; or non-Hodgkin lymphoma [NHL]) were selected whose first cancer diagnosis occurred between their baseline and follow-up MHOS assessments. Control subjects without cancer (n = 7160) were matched to cancer patients by use of propensity scores that were estimated from demographics and comorbid medical conditions. Analysis of covariance models were used to estimate changes in HRQOL as assessed with the Medical Outcomes Study Short Form-36 survey (mean score = 50, SD = 10). All statistical tests were two-sided., Results: Patients with all cancer types (except melanoma and endometrial cancer) reported statistically significant declines in physical health (mean scores: prostate cancer = -3.4, 95% confidence interval [CI] = -2.5 to -4.2; breast cancer = -3.5, 95% CI = -2.5 to -4.5; bladder cancer = -4.3, 95% CI = -2.5 to -6.1; colorectal cancer = -4.4, 95% CI = -3.3 to -5.5; kidney cancer = -5.7, 95% CI = -3.2 to -8.2; NHL = -6.7, 95% CI = -4.4 to -9.1; and lung cancer = -7.5, 95% CI = -5.9 to -9.2) compared with the control subjects (mean score = -1.8, 95% CI = -1.6 to -2.0) (all P < .05). However, only lung (mean score = -5.4, 95% CI = -3.5 to -7.2), colorectal (mean score = -3.5, 95% CI = -2.2 to -4.7), and prostate (mean score = -2.8, 95% CI = -1.8 to -3.7) cancer patients showed statistically significant decreases in mental health relative to the mean change of the control subjects (mean score = -1.2, 95% CI = -0.9 to -1.4) (all P < .05)., Conclusion: These findings provide validation of the specific deleterious effects of cancer on HRQOL and an evidence base for future research and clinical interventions aimed at understanding and remediating these effects.

In cancer observational studies, differences between groups on confounding variables may have a significant effect on results when examining health outcomes. This study demonstrates the utility of propensity score matching to balance a non-cancer and cancer cohort of older adults on multiple relevant covariates. This approach matches cases to controls on a single indicator, the propensity score, rather than multiple variables. Results indicated that propensity score matching is an efficient and useful way to create a matched case-control study out of a large cohort study, and allows confidence in the strength of the observed outcomes of the study.

Health plan member survey and cancer registry data were analyzed to understand differences in health-related quality of life (HRQOL) among cancer survivors and those without a cancer diagnosis enrolled in Medicare managed care. HRQOL was measured by the physical component summary score (PCS) and mental component summary score (MCS) of the Medical Outcomes Study SF-36, version 1.0. Cancer survivors enrolled in Medicare managed care have lower PCS and MCS scores than those enrollees who have never been diagnosed with cancer. PCS scores are worse than the MCS scores, and lowest for cancer survivors who are Hispanic, Medicaid enrollees, and those who have low income or education. HRQOL disparities are greatest among cancer survivors diagnosed with lung cancer and those with multiple primary cancer diagnoses. The influence of these variables persists when controlling for multiple variables including comorbidity status. Health plans should focus on addressing these disparities.

Goals of Work: The National Cancer Institute's Cancer Care Outcomes Research and Surveillance (CanCORS) Consortium is conducting a population-based study of newly diagnosed patients with lung and colorectal cancer to describe the experience of persons living with cancer and to understand which barriers present the most significant obstacles to their receipt of appropriate care. The keystone to this effort is the baseline patient survey administered approximately 4 months after diagnosis., Patients and Methods: We developed a survey to obtain information from patients newly diagnosed with lung and colorectal cancer about their personal characteristics, decision making, experience of care, and outcomes. We conducted a pilot study to evaluate the feasibility of a lengthy and clinically detailed interview in a convenience sample of patients within 8 months of diagnosis (n=71)., Main Results: The median length of the interviews was 75 min for patients with lung cancer (range 43-130) and 82 min for patients with colorectal cancer (range 46-119). Most patients had received some form of treatment for their cancer: 66.1% had undergone surgery, 28.2% had received radiation therapy, and 54.9% were treated with chemotherapy. In addition, 26.7% reported their overall health was less than 70 on a 0-100 scale, demonstrating that patients with substantial health impairment were able to complete the survey., Conclusions: A clinically detailed survey of newly diagnosed lung and colorectal cancer patients is feasible. A modified version of this survey is being fielded by the CanCORS Consortium and should provide much needed population-based data regarding patients' experiences across the continuum of cancer care and their outcomes.

Background: The context in which patients consume health information has changed dramatically with diffusion of the Internet, advances in telemedicine, and changes in media health coverage. The objective of this study was to provide nationally representative estimates for health-related uses of the Internet, level of trust in health information sources, and preferences for cancer information sources., Methods: Data from the Health Information National Trends Survey were used. A total of 6369 persons 18 years or older were studied. The main outcome measures were online health activities, levels of trust, and source preference., Results: Analyses indicated that 63.0% (95% confidence interval [CI], 61.7%-64.3%) of the US adult population in 2003 reported ever going online, with 63.7% (95% CI, 61.7%-65.8%) of the online population having looked for health information for themselves or others at least once in the previous 12 months. Despite newly available communication channels, physicians remained the most highly trusted information source to patients, with 62.4% (95% CI, 60.8%-64.0%) of adults expressing a lot of trust in their physicians. When asked where they preferred going for specific health information, 49.5% (95% CI, 48.1%-50.8%) reported wanting to go to their physicians first. When asked where they actually went, 48.6% (95% CI, 46.1%-51.0%) reported going online first, with only 10.9% (95% CI, 9.5%-12.3%) going to their physicians first., Conclusion: The Health Information National Trends Survey data portray a tectonic shift in the ways in which patients consume health and medical information, with more patients looking for information online before talking with their physicians.

Little is known about access, sources, and trust of cancer-related information, or factors that facilitate or hinder communication on a population-wide basis. Through a careful developmental process involving extensive input from many individuals and organizations, the National Cancer Institute (NCI) developed the Health Information National Trends Survey (HINTS) to help fill this gap. This nationally representative telephone survey of 6,369 persons aged > or = 18 years among the general population was first conducted in 2002-2003, and will be repeated biennially depending on availability of funding. The purpose of creating a population survey to be repeated on a cyclical basis is to track trends in the public's rapidly changing use of new communication technologies while charting progress in meeting health communication goals in terms of the public's knowledge, attitudes, and behaviors. The HINTS survey instrument was built upon extant models of health communication and behavior change, taking into account the rapidly changing communication environment. Questions in the survey were drawn from an overall theoretical framework that juxtaposed the"push" aspects of traditional broadcast media against the"pull" aspects of new media. HINTS data will be made widely available for researchers and practitioners; it will help further research in health communication and health promotion and provide useful information for programs, policies, and practices in a variety of settings.

Background: Advances in clinical research methods have led to prospective randomized controlled (level 1) clinical studies evaluating diagnostic modalities resulting in a paradigm shift in the literature for diagnosing deep vein thrombosis (DVT) and pulmonary embolism (PE). To assess whether these advances correlate with clinical practice, we analyzed 21-year trends in diagnostic testing for patients with venous thromboembolism., Methods: We used discharge data from the National Hospital Discharge Survey (1979-1999) to determine DVT and PE cases annually. Procedure fields were screened to determine patients who had DVT or PE or who underwent venography, arteriography of the pulmonary arteries, pulmonary scintigraphy, or DVT ultrasonic scanning. Searching EMBASE, MEDLINE, and the American Thoracic Society guidelines, a literature-based time line of level 1 studies was derived and juxtaposed against trends and procedure use., Results: Improved diagnostic tests resulted in diagnostic changes in patients with suspected venous thromboembolism. These observed changes correlated over time in subsequent years with level 1 studies. Diagnostic DVT approaches showed an initial marked increased use of venography followed by a rapid decline that coincided with increased use of Doppler ultrasonography. Diagnostic approaches to PE were characterized by initial marked increases in lung scanning followed by a rapid decline as use of ultrasonography considerably increased and pulmonary angiography modestly increased., Conclusions: Diagnostic approaches to DVT and PE have changed markedly during the past 2 decades, in temporal harmony with the evolving literature. Change in clinical practice occurs over years, and long-term follow-up is required to capture this change.

Obesity has reached epidemic proportions in the U.S. and more developed countries, particularly so among adolescents. A substantial impact on public health could be achieved if other factors causing obesity besides the conventional ones of diet and physical activity could be identified and acted upon. The present study investigates whether there is a link between low sleep quality and obesity in a tri-ethnic, cross-sectional sample (n = 383) of male and female adolescents ages 11-16 years old (Heartfelt Study). Sleep quality was expressed as two variables, total sleep time and sleep disturbance time obtained by 24-hour wrist actigraphy. Percent body fat and body mass index (BMI) were used together to define obesity. The potential influence of demographic and behavioral confounders were considered in models that described the relation of sleep to obesity occurrence. Obese adolescents experienced less sleep than nonobese adolescents (P < 0.01). For each hour of lost sleep, the odds of obesity increased by 80%. Sleep disturbance was not directly related to obesity in the sample, but influenced physical activity level (P < 0.01). Daytime physical activity diminished by 3% for every hour increase in sleep disturbance. The above observations were independent of potential confounding variables. Inadequate and poor sleep quality in adolescents may be important factors to consider in the prevention of childhood obesity., (Copyright 2002 Wiley-Liss, Inc.)

This study examined the relationship between breast cancer patients' experience of barriers to accessing health information and their psychosocial health outcomes and explored the extent to which this relationship was mediated by patient perceptions of competence in dealing with health-related issues. Study sample consisted of 225 women surveyed within 6 months of diagnosis. Regression analyses suggested that patients who reported greater difficulty in accessing needed information experienced lower emotional (P=0.05), functional (P<0.05), and social/family (P<0.05) well-being as well as lower perceptions of health competence (P<0.001). Also, patient perceptions of health competence mediated the relationship between barriers to accessing information and patient outcomes (emotional well-being, P<0.05; functional well-being. P<0.01; social/family well-being, P=0.01). Breast cancer patients often report dissatisfaction with the extent to which their information needs are addressed by their health care providers. Our findings underscore the need for designing and implementing interventions that would aid providers in better meeting the information needs of their patients.